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I am so sorry. I've gotten a call like that, it was like being run over by a mac truck. You're right though, a true blessing it was quick and after 15 additional years! Amazing..... I hope I am as fortunate when my time comes. Just want a chance to say goodbye to my husband and daughters...

We've traveled to PR for the last 4 x-mas vacations, stayed about 2 weeks each time. Within 48 hours, my sats go up 3-4% and I feel so much better. Never had any difficulty with meds, but I've always traveled with a reserve stock. My mom went last year with us when she had severe bronchitis...

I am PI (severely failure to thrive as a child) and while in college, really noticed that fat was the main culprit for my stomach aches (which were daily with enzymes). I cut out fat, and before I realized it, my stomach aches were quite rare. Without the pain to remind me (and busy as heck...

Helenlight, adoption is a wonderful way to build a family, we were blessed enough to experience it twice. Our children ARE our own. If you have the ability to screen for CF, I would personally do so. I would have difficulty telling any child I could have prevented their suffering. Having...

Yes, it could. I react very quickly to houses that have mold, dust, animal dander, mice, you name it. And if I have to stay there, I get sick within a few days. ( I have learned I simply dont stay, no matter what) I would suggest getting a heavy-duty hepa filter and sticking it in your...

I can usually get 3-5 days out of a decent peripheral. 24 hours, as long as the IV is running fine and she has no pain or redness as the site, seems a bit short.

I usually feel better within 48 hours, but I dont have any nasty critters other than PA. With regard to the oxygen, I really wouldnt worry. I had a bad infection 12 years ago and had to be on oxygen 24/7 for a while. After that infection was over, I havent used oxygen since, except in the...

Another thing to throw into the pot- The high dose ibuprofin didnt work for me, prednisone did, but my doc didnt want me on it long term (ie the rest of my life). A drug that has been shown to be effective for inflammation is methytrexate. I've been on it for 7 months now and it does work...

Kenna, totally hear you. I havent been sleeping well at ALL either, mostly due to all the pain and coughing. For me, my husband and kids are the motivator. I have to get up to make lunches, do hair, and drive kids to school. My husband can manage if I simply cant get out of bed, but its the...

A combo of wheezy, sweaty, junky, salty, and stinky!!!;) Love this! Although for me, instead of skinny, there should be bloaty!!!! Thanks for bringing a smile to my face. Needed it.

Twist- yep, I was able to control the blood sugar with diet and exercise for years but then tipped over to being more Type 1ish around 40.

Rick, I was in a similar boat 5 months ago. Almost identical actually, including the FEV1 drop. Add on serious chronic reactive asthma from my immune system going haywire. I got my blood sugar under control pretty quickly and my A1C is now about 5.4, but I am STILL am tired, and my FEV1...

I havent, but its a great question. I use a 12" medical wedge pillow and that seems adequate for now to help with the coughing. That's in addition to having the whole bed on a slight slant for my GERD (the head of the bed is under wooden blocks).

ethan, some folks with CF have to eat a low fat diet, like me. And I have heard of others as well. If I actually ate everything I wanted to, I'd be morbidly obese. And its been this way for over 20 years, even with daily exercise.

If you are not sure what to do, I think it would come down to how much you trust your doctor. I don't feel like I can give you any real advice other than that without knowing what your symptoms are, FEV drop, what you're culturing, what orals you've been on before, suceptibility, etc, etc...

Franzie- We might be able to be of more help if you explain your situation a bit more. Are you on oral antibiotics and your doc is suggesting a swtich to IV?

Just goers to show you how different CF is for people. I'd be making an effort to lose 10 lbs.....

I was just diagnosed 5 months ago. They started out having me test my blood sugar when I woke up, right before a meal, one hour post meal, and two hours post meal. Yes, this means like 12-14 sticks a day if you do snacks. I started out with 3 shots per day of short-acting insulin (novolog...

Shelia, I'm so sorry. I know from personal experience how devastating this can be. No real suggestions other than to have meetings with all your teachers with your parents there and try to get them to cut you some slack at the end of the year. For next year, might want to think IEP or...

Maybe the patient advocate knows something that was not brought to light. I know my doc was not exactly over the moon about this new combo.